Sep
14
Mon
2020
Global Genes LIVE! A RARE Patient Advocacy (un)Summit @ Virtual
Sep 14 @ 8:00 am – Sep 25 @ 11:00 pm

Join us for a variety of interactive and educational online events, meet-ups, workshops and performances September 14-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.

Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and strategic ways to accelerate change. We look forward to bringing you new and exciting programming and activities at Global Genes LIVE!

*REGISTER HERE: https://globalgenes.org/event/live/

Sep
23
Wed
2020
E-learning Expert LGMD Masterclass — TREAT-NMD @ Virtual
Sep 23 – Sep 24 all-day

Attention Healthcare Professionals: Virtual TREAT-NMD LGMD Masterclass To Be Held September 23-24, 2020

Applications have now opened for the 1st TREAT-NMD Limb Girdle Muscular Dystrophy Masterclass. The masterclass will now be an e-learning event, with more details to follow soon. The event will take place on Wednesday 23rd and Thursday 24th September 2020 and feature sessions on diagnosis, emerging therapies, physiotherapy, genetics and much more. There will also be a range of breakout sessions with Q&A interaction so that delegates can discuss issues, ask questions and network.

This masterclass is aimed at professionals working in the diagnosis, care and treatment for people living with LGMD.

*Please note the agenda is in draft form, as TREAT-NMD recently moved the event from a face to face meeting to an online event*

Click here to see the Draft Agenda

To apply for a place, please fill in this Application Form

The agenda and selection of participants is overseen by the TREAT-NMD Education Committee (TEC). Whilst financial support is generously received from multiple funders, the masterclass is organized and run entirely independently by TREAT-NMD with no input from the funders.

There is no closing date for applications but numbers still limited.

If you would like any further information, please contact LGMD Education Coordinator katie.pegg@newcastle.ac.uk

Sep
30
Wed
2020
6th Annual LGMD Awareness Day
Sep 30 all-day
MDUK Muscles Matter 2020: LGMD Seminar @ Virtual Event via Zoom
Sep 30 @ 10:00 am – 7:15 pm

Join us for the ‘MDUK Muscles Matter 2020’ limb girdle muscular dystrophy seminar

To celebrate limb girdle muscular dystrophy (LGMD) Awareness Day, we are holding an online seminar on Wednesday 30 September to keep you up to date with the latest research into LGMD.

 

You will have the chance to hear from experts about progress into research and treatments, and get the opportunity to ask questions.

 

The LGMD seminar is on Wednesday 30 September at 10am. The seminar is free to attend and will be held on Zoom.

There is a session on employment following the LGMD seminar, which is not directly linked but that you might find interesting to attend too. You can see the full list of topic seminars here.

Practical issue seminars

Living in a world with COVID-19: Tuesday 25 August, 3 – 4.10pm > book the Living in a world with COVID-19 seminar

Assistive technology: Wednesday 9 September, 6 – 7.10pm > book the assistive technology seminar

Managing education; overcoming challenges for children, parents and teachers: Monday 14 September, 4.30 – 5.40pm > book the education seminar

Navigating the world of employment: Wednesday 30 September, 12 – 1.10pm > book the employment seminar

Accessing financial support: Saturday 10 Oct, 12 – 1.10pm > book the financial support seminar

Accessing services in the world of COVID-19: Thursday 22 October, 6 – 7.10pm > book the services seminar

 

Oct
9
Fri
2020
A Promising New Oral Treatment for LGMD2I: An Update on the Development of BBP-418 (Ribitol) @ @ virtual
Oct 9 @ 2:00 pm – 4:00 pm

The Speak Foundation is hosting an important webinar with ML BIO SOLUTIONS. ML BIO SOLUTIONS will present “A Promising New Oral Treatment for LGMD2I: An Update on the Development of BBP-418 (Ribitol).” Sign up at: https://us02web.zoom.us/…/register/WN_zz63FN67TLqhYjC6kVRbyw.

October 9, 2020; Time: 2-4 pm Eastern Time

ML Bio Solutions is advancing the first-ever oral treatment for LGMD2I – BBP-418 (Ribitol). This treatment may enhance, and partially compensate for, diminished muscle function caused by the genetic driver of the disease. Join us to learn more about this treatment, the drug development process, and the status of the BBP-418 clinical studies.

Our panelists are Douglas Sproule, MD (Chief Medical Officer, ML Bio Solutions) and Nicholas Johnson, MD (Principle Investigator for the BBP-418 Lead-in Study).

The webinar, hosted by the Speak Foundation, is free and open to patients, family members and interested others.

Oct
24
Sat
2020
10th Annual Casino Night for CureLGMD2i @ @ virtual
Oct 24 @ 7:00 pm – Oct 25 @ 11:00 pm

We will be hosting our 10th Annual Casino Night event on October 24th.

It is with mixed emotions that we will be virtually hosting our 10th Annual Casino Event to benefit CureLGMD2i.  Over the years, the support of our friends, family and local community has helped to make Casino Night our flagship fundraising event. However, the current COVID situation is requiring us to do things a bit differently.  Although we will miss getting together in person with our supporters and loved ones, we are excited to make our 10th Annual Casino Night an international event!

Join us for a virtual happy hour and auction event via zoom. Hosted by the Brazzo family and our emcee, Melissa Grove! Grab your cocktail and tune in from the comfort of your own home.  Our virtual event will have games of chance and auction items that you love, but none of the hassle of leaving your house!  Register now to make sure you can view all the prizes in advance of the event. We are actively seeking sponsorships and prize donations to make this our most successful event to date!  Proceeds will be used to continue supporting research in drug therapies, gene editing, and patient conferences.

REGISTER HERE!

 

Thank you so much for your interest and support!

Keith & Kelly Brazzo,
Co-Founders of CureLGMD2i

590 Centerville Road #340

Lancaster, PA 17601

(717) 405-7518
Tax ID#: 80-06804

Nov
21
Sat
2020
LGMD Patient Day 2020 @ Virtual Event via Zoom
Nov 21 @ 9:00 am – 1:00 pm

Mark Your Calendar: 2020 LGMD Patient Day! 💚

On November 21st, 2020, from 9-1pm CST, University of Kansas Medical Center will be hosting an event for LGMD patients, family, and friends.

In order to keep all event participants safe, the event will be hosted virtually this year. This is a wonderful opportunity to connect and get new updates in the LGMD research field.

To help prepare for this event, please RSVP to this event by August 31st. You can RSVP via email gkleindienst@kumc.edu.

 

Dec
14
Mon
2020
Understanding LGMD: Help for the newly diagnosed @ Virtual
Dec 14 @ 4:00 pm – 5:15 pm
Mar
23
Tue
2021
Gene Therapy and Neuromuscular Disease Webinar  @ Virtual
Mar 23 @ 3:00 pm – 4:00 pm

Gene Therapy and Neuromuscular Disease Webinar 
Tuesday, March 23 | 4 – 5 p.m. ET

Gene therapy has emerged as a treatment option for some neuromuscular disorders. This MDA Engage Webinar will explore what gene therapy is and how it works in neuromuscular diseases. The landscape of gene therapy research will also be discussed.

Speaker: Sanjay Bidichandani, MBBS, PhD, Genetics Section Chief and professor of Pediatrics at the University of Oklahoma Health Sciences Center

CLICK TO REGISTER

Mar
26
Fri
2021
Outcome Measures: What Are They and Why Are They Important For Clinical Trials @ @ virtual
Mar 26 @ 2:00 pm – 3:00 pm

Presenter:

Lindsay N Alfano, DPT, PCS

Principal Investigator, Assistant Professor

The Abigail Wexner Research Institute at Nationwide Children’s Hospital

Center for Gene Therapy

To Register visit:

https://us02web.zoom.us/webinar/register/WN_CcK71LaHSxqBnyPd0NfuYQ

Mar
30
Tue
2021
Maintaining Breathing Function with a Neuromuscular Disease 
Mar 30 @ 3:00 pm – 4:00 pm

Maintaining Breathing Function with a Neuromuscular Disease 
Tuesday, March 30 | 3 – 4 p.m. ET

Respiratory complications are common in neuromuscular disease (NMD). This webinar will shine a light on respiratory management for neuromuscular disorders. We will discuss early signs and symptoms to long term respiratory management strategies for both the pediatric and adult communities. Types of equipment for respiratory support will also be discussed.

Speaker: Debbie Rhodes, Respiratory Therapist and Manager at INTEGRIS Health

CLICK HERE TO REGISTER

Apr
29
Thu
2021
LGMD European Masterclass @ Virtual
Apr 29 – Apr 30 all-day
Jul
17
Sat
2021
2021 Dystroglycanopathy Patient and Family Conference
Jul 17 – Jul 18 all-day

Questions? Contact Carrie Stephan 319-356-2673; carrie-stephan@uiowa.edu

 

Sep
17
Fri
2021
2021 National LGMD Conference @ Virtual
Sep 17 – Sep 20 all-day

Announcement 2021 Conference Dates

The 2021 National LGMD Conference is going international for 2021!  Our conference will be a series of events and sessions held virtually from September 17th through the 20th.  Registration begins in early April.  Check back then to register!

Best news?  The events are free for patients to attend and we hope to have an unprecedented number of individuals living with LGMD attend in 2021!

Mark your calendar….more details will be announced in the coming months

Sep
30
Thu
2021
7th Annual LGMD Awareness Day
Sep 30 all-day
Translate »